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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Cross Party Group on ME

Discussion in 'General ME/CFS News' started by Yogi, Oct 9, 2012.

  1. Holmsey

    Holmsey Senior Member

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    You're just trying to wind me up but I'm not playing.
     
  2. Holmsey

    Holmsey Senior Member

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    Hi Barb,
    While I accept that some patients in the UK do have very bad experiences I'm not sure it's quite the norm that Bob indicates it is. Like you I recognize the limits placed on clinicians for what is a poorly understood illness with no accepted treatments.

    I've had one GP, not my own, tell me there's nothing they can do because they can't even prove I'm ill but beyond that one ill informed individual my experience has been very positive. I also get shrugs from my GP but I can see it's because he desperately wants to help me but feels powerless to do so beyond treating my symptoms as described.

    In the first fling of this illness I saw three specialists in three different fields and can't even in reflection criticize any of them so either I'm extremely lucky or there are many many good doctors out there, at least in rural Scotland.
     
  3. Bob

    Bob

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    Yes, I admit I have made a few assumptions here, so I could be wrong about the motivations.
    But, equally, you don't know what the motivations were.
    We are all speculating.

    I assumed that the desire to drop the term 'CFS' was just to move the remit away from the psychological model.
    There was no discussion re diagnostic criteria, so it's impossible to know what the exact intentions of the group were.

    The choice that the convener put forward in the vote was between ICD10 G93.3, and all fatiguing illnesses.
    It wasn't a sensible vote.

    I don't know what you mean when you refer to ICD10 F48.8.
    The convenor wanted that included in the remit for the CPG.
     
  4. Holmsey

    Holmsey Senior Member

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    Perfectly put.
     
  5. Holmsey

    Holmsey Senior Member

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    The NHS cannot be held accountable for the lack of understanding around our illness, that short coming is primarily political, partially parochial, partially financial but mostly just due to the complex nature of this condition.

    Ultimately, and for patient protection, treatment will always be limited by guidelines, clinicians in the UK as elsewhere have little scope out with those guidelines.
     
  6. Holmsey

    Holmsey Senior Member

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    I understand the frustration, but bad doctors aside, this isn't their fault they don't direct research they simply work within 'current official' understanding and treatment options. Cancer is a well understood illness with clear pathology, ME/CFS is not, that's why we advocate for more research.
     
  7. Esther12

    Esther12 Senior Member

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    I thought it was a rather unfair straw-man, and also an attitude which rather ignores that fact that certain groups of patients can be very badly treated by a medical system which treats other well. Some people do start from the assumption that those with power and authority will treat others fairly, in which case, many of the complaints from CFS patients will seem unbelievable, and be taken as evidence that it is the patients themselves who are the problem. This sort of attitude is often used to dismiss legitimate complaints from those in positions of weakness. I don't think that means that we should pretend that there are not unusual problems related to the way in which CFS patients are treated by the CFS, or that there are not many people who have important and legitimate grievances about the way in which they have been treated. It can always be tempting to pragmatically beneficial to bend one's arguments to the desires and interests of those already with power - but I think that such pragmatism is always harmful in the long-run.

    That sounds like my current GP, and I'm clinging on to him because he's the best I've had since getting ill a decade ago. All but one of the others have reassured me that so long as I keep increasing the amount I do I'll recover, and that it's important that I don't let my symptoms stop me doing things. I have heard that things are worse in the south-east, and were particularly bad when I got ill and people trusted the Chalder/Wessely approach more. The lack of provisions in Scotland could have some advantages too, in that there's less faith in those claiming to be able to be experts in CFS and be able treat it.
     
    Valentijn likes this.
  8. Holmsey

    Holmsey Senior Member

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    Yes, I agree, and those centers would therefore have to consider all fatiguing illnesses with and unexplained diagnosis, so that they could decide it it was Cancer, Psychiatric, Addisons or still just unexplained - ME/CFS, ME, PVS, take your pick.
    My point is you can't say I want a center just for ME and no other condition and also say you want that center to safeguard against miss-diagnosis.
    If this had been your only post we'd be in complete agreement.
     
  9. Holmsey

    Holmsey Senior Member

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    "Chronic fatigue syndrome is indexed in the following manner in ICD-10:
    Syndrome
    - fatigue F48.0
    - - - chronic G93.3
    - - - postviral G93.3"

    If my post didn't it should have said, F48.0 not F48.8.

    The second vote option said 'all fatiguing illnesses', presumably it should have said, all unexplained fatiguing illnesses but perhaps that was implied as if they were explained then they were already out with our understanding of ME / ME-CFS.

    In any case, where's the harm if some psyc cases were referred by GP's, my GP has regularly referred me to higher authority to confirm his thinking or because he was unclear, that's the NHS service model. As long as the center then CORRECTLY sent such misdiagnosed patients on to a psychiatrist then surely that's efficient and effective management, and the best use of the proposed asset. It's also a much more palletable option for an MP who is GENUINELY trying to envisage brining such services into being.
     
  10. Holmsey

    Holmsey Senior Member

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    I've gravitated to one GP, simply because I can see he's doing his best for me, he's even gone as far as to read up and cross reference studies I've mentioned over the years. That said his initial advice was that the best prognosis was for those who fought the illness the hardest, turns out that was the worst advice I've ever been given. Point I'm making is it was given in good faith, because that's what he was being told by the system he trusts.
    Until my last visit just a few weeks back I never actually knew whether he believed the illness to be physical or psychological, and that was fine because as I say, I knew he was doing his best in any case.
    On my last visit I happened to mention something SW had stated, for a while my GP was confused as to who SW was and on realizing to whom I referred, he shook his head and stated, 'when the answer comes it won't be psychiatric'.
    There are good GP's who know what's in front of them.
     
  11. Bob

    Bob

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    Agreed. I wonder if these issues were discussed at the CPG.
     
  12. Bob

    Bob

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    I knew what you meant by "F48.0", thank you, but I don't understand the context in which you were using it.
    CFS/ME/PVFS have nothing to do with F48.0.
    F48.0 only relates to Neurasthenia and 'Fatigue syndrome'. ('Fatigue Syndrome' is not 'CFS'.)
    F48.0 indicates a 'neurotic disorder' (purely a psychological illness), and not a 'neurological disorder'.
    CFS/ME/PVFS are categorised under G93.3.
     
  13. Esther12

    Esther12 Senior Member

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    Having read more of what was being told to GPs when I got ill, I'm more understanding of their approach to me and my illness (to some extent, I understand them being frustrated and irritated by the fact that I was not improving). On the other hand, I do think that GPs should do more to look critically at the evidence, particularly in controversial areas like CFS/ME/PVFS/etc. We cannot have a system which tolerates both researchers spinning their results, and GPs which simply trust the claims of those researchers.

    I do think that more needs to be done to decide who is responsible for these sorts of claims being made to patients.

    I think it is a relatively small group of researchers who have badly let patients down, but there should at least be some serious attempt to find out what has led to these problems, how they can be stopped, and how they can be avoided in the future.
     
    Holmsey likes this.
  14. Bob

    Bob

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    Holmsey, when I first started posting on this thread, it was in response to some strongly worded posts (including some rude and insulting posts - now mainly deleted) about members of our community/communities.
    My intention was to put forward a different perspective about the subject, in the hope that the people posting strongly worded comments could see that the issues were complex and multi-faceted.

    So, my posts could very well have been one-sided, because I was trying to explain a particular advocacy position.
    But that doesn't mean that I hold the same views as the people that I have been defending, other than where I have specifically expressed my own opinions.

    Equally, I don't like seeing 'ME' advocates saying things that deeply offend people who prefer the use of the term 'CFS'.
    I have often rigorously challenged 'ME' advocates on this forum in the past, by explaining how their opinions impact on other people.

    I know from experience that any anger and frustration, surrounding this subject, is mainly based on misunderstandings; different personal perspectives; and a breakdown in communication.
    Once people start to understand each others' perspectives, then I invariably see the two sides coming together and supporting each other, if not entirely agreeing with each other.
    It doesn't always happen, of course. Sometimes the differences are irreconcilable.

    (Unfortunately, this breakdown in communication and understanding also appears to be being played out at the CPG. It's unhelpful and unproductive.)

    All the time, in this thread, I've been coming from a position of attempting to challenge the sometimes divisive opinions that have been expressed here, which I've found offensive at times.
    It's ironic that you accuse me of being divisive, when I have been attempting to show people that some of the opinions that have been expressed in this thread are divisive and counter-productive.
    On this thread, 'ME' advocates have been criticised, unfairly in my opinion, and I've attempted to challenge those who make those criticisms, by trying to explain the complexities of the issues.
    That doesn't mean that I always agree with 'ME' advocates.
    (I have explained my own opinions quite clearly, I think, in at least one post.)

    I've also wanted to point out that the information available to us it incomplete, and that we can't make any meaningful judgements until we know exactly what has happened.

    You seem to have misunderstood where I'm coming from.
    Maybe that's entirely my fault. Maybe I haven't expressed myself well.

    My position isn't that "ME is different to CFS", and I don't think I've said that in such simple terms.

    The discussion in this thread has gone around in circles, and I've clearly failed to do what I set out to do.
    But I do hope that some members at least have come to understand that the subject is multi-faceted.

    Many members of the community support the CCC and ICC, for various reasons.
    I think we should all try to understand these reasons before we dismiss the wishes of people who support the CCC and ICC.
    I think the main reason for the desire for these criteria to be used is based on first-hand personal experience.
    And there are also political reasons, and scientific reasons.


    My personal position is that I support the use of the CCC and ICC for research purposes, along with any other selective biomedical criteria that researchers wish to use.

    The CCC/ICC are based on years of careful observation by many clinicians.
    They have not just been plucked randomly out of the air.
    If there are no better ways to define an illness, then careful observation is the only way to do it, and it is the traditional way to do it. (It's what the CDC is doing right now with its new definition.)
    So for this reason, and because of my personal experiences, and the experiences of other CFS/ME patients, I believe that the ICC & CCC have value.
    Mistakes can be made, but these are corrected as time goes on and as more knowledge is acquired.

    Wanting the ICC and CCC to be used for research has nothing to do with dividing a community.
    It's about wanting the best science. Using the most selective criteria available is good science. It moves the science forwards for everybody, not just the researched group.

    I'm not saying that patients should be divided up.
    I'm just saying that the more selective biomedical criteria should be used in research.
    Any selective biomedical criteria. It doesn't have to be 'ME' criteria.

    I agree that all patients should be included in a clinical sense, but that doesn't mean that patients can't be sub-setted in a clinical setting.
    Sub-setting for research is an obvious approach.
    I think that sub-setting in the clinical sense could have advantages now, as well.
    Patients could be diagnosed using the various criteria, in clinics, in order to further the research, and further our insights into CFS/ME.

    For example, those meeting the ICC criteria might all respond to similar treatments in a similar way.
    Those falling outside the ICC, but within Fukuda, might be the best group to be investigated for other causes of their fatigue.
    Those falling outside Fukuda might respond well to psychological interventions. Or they might not.
    We don't know until we try it out.
    So why aren't patients being diagnosed using various criteria now, and strict records kept, and records kept on the paths of their illnesses?
    This could give us a lot of invaluable information along the way.

    Just saying that we are where we are, and no changes need to be made will keep us exactly where we have been for 30 years.
    We don't have to all agree with each other, but let's at least try to understand each others' opinions, experiences, and perspectives, and why we have them.
     
  15. Skistones

    Skistones

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  16. Bob

    Bob

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    I've just read back over my first few posts in this thread, and as far as I can see, you have completely misrepresented me, in the above quote.

    I have not advocated for clinical separation of patients, or for exclusion of CFS/PVS patients, or that 'ME' and 'CFS' are different, or that exclusive 'ME' clinics should be set up in Scotland, or that the 'CPG on ME' should exclude CFS patients in its remit.

    I'm pretty certain that you won't be able to find a quote where I have advocated for any of the above.


    I might have advocated for using the term 'ME' instead of 'CFS' (a simple name change), but that would be an inclusive process, as far as I am concerned. And I think I've only discussed the possibility, rather than 'advocate' for it.

    I agree that I have defended the right of people to lobby for their own self-interests, but I don't think that's controversial. It doesn't mean I have to agree with what they are lobbying for. After all, you would lobby for your own self interests, wouldn't you? We all lobby for our self-interests. 'ME' advocates might say that you were being divisive if you were to lobby for 'CFS' clinics, because they might say that excludes them from receiving proper treatment, and that it excludes their needs.

    My approach to this thread has been to try to get each other to understand each other's points of view. I've been attempting to bridge divides, not to divide further. I'm sorry that you've completely misunderstood my posts.
     
  17. Holmsey

    Holmsey Senior Member

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    You appeared to suggest in an earlier mail that your belief was that voting option 1 only intended to exclude unexplained fatigue, IMO, the WHO have covered this option via F48.0, thus allowing voting option 1 to be stated simply as ICD10 - G93.3 without mention of ME, the deliberate inclusion of ME suggests a quite different agenda.
    Hope this clarifies.
     
  18. Quilp

    Quilp Senior Member

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    Hello Holmsey ( my bolding )

    What would you define as the norm ?

    My own experience of talking to local support groups is that GP's have badly let us down. Perhaps it's the effusion of nonchalance, the arrogance, the air of indifference.......perhaps it's just me. Yes there are good G.P's; kind, sympathetic, engaging, and of course as you have rightly pointed out, constrained by the fact that there are no universally accepted treatments, but that should be no substitute for ignorance.

    There are an estimated 250,000 sufferers of an illness that is a ''serious and potentially life threatening disease'' and yet there are many ( I believe a significant number ) GP's who know less than nothing ( that is they think it is something it is not ) about an illness that has been alluded to for decades. That is difficult to countenance.
    If just one G.P. in my practice was able to contribute to this thread in any meaningful way, I would be, well..........

    It would seem that rural Scotland is far more enlightened than urban Yorkshire.

    Kind regards, Mark
     
  19. Bob

    Bob

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    OK, but you don't know what the motivation was, for including the name, any more than I do.
    As I've suggested before, it could be just to move away from the dreaded 'fatigue' word.
    It might be nothing to do with diagnostic criteria.
     
  20. Holmsey

    Holmsey Senior Member

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    Ok, I have to admit having read this post I've probably picked you up wrong, we're clearly far more in accord than I've previously appreciated.

    I don't know when CCC came into being in relation to those early diagnoses of ME, I suspect it wasn't what lead to the ME diagnosis and certainly the ICC is still to be acknowledged it's so recent.

    Coming back to this thread my position is simply that what was once given a cursive nod as ME is now given a similar cursive nod as ME/CFS or PVS, general fatigue which may be related to depressive or other psychological conditions is CLEARLY a different animal. Clinicians who suggest PVS, in my opinion, are acknowledging exactly the same illness but accounting for, as in my case, a clear and severe infection as a pre-cursor to systemic collapse of multiple bodily systems, as a clinician you'd have to be a numpty to ignore them.

    I believe that if you took those doctors who formerly diagnosed ME and presented them with a cohort of PVS or CFS patients today then they would insist that it was ME. I doubt that was lost on Mary Fee or the other MSP's who would no doubt collaborate out with the CPG. If the same understanding is lost to either group mentioned in this thread then IMO the MSP's have a better grasp on the reality of our current understanding of this illness than either of those two groups.

    Dispassionate rationality is the hallmark of good politics, the proposition put forward even if accepted by those MSP's involved effectively derailed any chance of the group achieving anything, no government is going to endorse exclusivity where public funds are involved, at least not if they want re-elected. I doubt the MSP's misunderstood the objective in forcing the vote, rather they just plainly saw the flawed logic in the proposition and realized how unsaleable the overall objectives of the group became if burdened with that exclusion clause.

    We took a group of MSP's who clearly wanted to help us, who clearly wanted to advance our position and then made it political suicide for them to do so.

    We are the only losers, go check out Mary Fee's website and see how many other patient groups she supports, be clear this is only a set back for us, not for any of those politicians who will look back and think, wow that was a lucky escape!
     

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